29yrs - valve choice and aortic aneurysm ( difficult decision due to way of life )

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Protimenow

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Hey, Scribe.....

Once you get the hang of it, the Coag-Sense is really pretty easy to use.

I like Pellicle's suggestion - stand with your hands by your sides while the strip warms on the meter. Personally, I've rinsed my hands with warm water, and this usually draws enough blood. I've also, occasionally, swung my arms in a propeller motion - making sure that there's room overhead. I always test standing up, but there's no real reason to do this (I test in the kitchen, and don't care about sitting down to do the test).

The new Coag-Sense only gives you 30 seconds, so you may want to wait a bit before 'standing.' OTOH, you have at least three minutes to put the blood on the strip (actually, until you put blood onto the strip, it's still good - it may last hours out of the pouch before becoming unusable). I hold the knuckle on the finger that I'll be lancing, with the thumb and forefinger of my other hand, while the strip warms up. This usually brings enough blood to the finger to fill the transfer tube.

My first attempts with the new tubes (I'm assuming that you have the new tubes with a small capillary tube and a thin black plunger) weren't especially successful until I carefully read instructions. (Being 'too smart,' I don't always RTFM).

In any case, you must get the small amount of blood collected in the tube, and deposit the blood on the strip within 15 seconds of making the incision. With a bit of practice, this will be easy to do -- maybe easier solo, because you'll have a better sense of where your fingertip is, and where the droplet is forming. If you wear glasses for close work, these may also help.

Prepare your lancing device. Get two transfer tubes ready (I take two, in case I drop one on the way to my finger or a plunger drops out because I've tilted it - it's happened....). I get a paper towel, doubled, to stop my incision from bleeding after I've gotten my drop onto the strip.

While the meter is doing the countdown with the strip warming, get the lancing device near the spot on your finger that you're going to incise. Soon after you hear the beep, incise the finger. (Again, you've got minutes to do this).You may want to squeeze a bit of blood, just to make sure the drop is large enough. Next, take the tube and hold it horizontally (not vertically -- it's easier for the tube to draw the blood sideways than it is to suck it upwards), and watch as the tube draws the blood to the white stop on the tube. If you don't have enough blood, squeeze the fingertip just a bit, and the tube will fill to the white stop. (I was told, years ago, that you can slightly pinch the incision, opening it slightly, and you'll get more blood to come out).

Place the tip of the tube in the well on the strip (there's a green light showing where to put the blood). You might put it a bit too low -- you'll feel the wheel on the strip spinning. Draw the tip of the tube back slightly, press the black plunger depositing the blood into the well on the strip, and the testing will start.

In a minute or less, the meter will show your PT and INR.

Perhaps the thing that may cause a bit of trouble for some users is trying to get the blood to flow UP into the tube - I don't know if this is what you've done - but it works well with the finger positioned so the drop is facing up and the horizontal tube just draws the blood in. This may take a bit of practice (and maybe a good pair of glasses to see what's happening), but you'll get the hang of it.

If you're still having problems, there are instructions on the coagusense.com site, and if you call support, they'll walk you through the process.

(If you have more questions about my experiences with either Coag-Sense meter (I have both models), or about the few extra strips that I've got, please feel free to send me a private message).
 
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pellicle

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I just noticed this aspect, and that its Julien Du's thread (who was banned as a result of an argument with a khunt who's gone now anyway)

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happy Halloween Julien ... just saying
 

leadville

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Banned ? it's a shame, I have just read this whole thread

It would be interesting to read on how he is doing
with him being so active & young it would be helpful to others in a similar position, maybe
 

pellicle

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It would be interesting to read on how he is doing
with him being so active & young it would be helpful to others in a similar position, maybe
he's an interesting guy and despite his rough edges (as far as religiously sensitive proper folk are concerned) had a lot to share. I spent many an hour talking to him about things like trapping and hunting as well as warfarin. Indeed there was a fascinating discussion (not sure if it was on here) where he avoided an amputation from a thoroughly frozen leg which can basically only be ascribed to warfarin.

I must get my arse over to Canada and visit him one day before I'm too old to ski and shoot.

PS: you'd sh1t yourself laughing at where I took my scoot today with a mate who's 10 years younger on his MTB (and I kept pace with my itty bitty wheels)

PPS: live life while you can, because you're a long time dead
 

Jmprosser.lab

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There is plenty of facts on here so I will just give my broad opinion and say good luck and I wish you well. It’s very sad that I keep seeing/hearing from people that are leaving this forum because it no longer feels constructive and welcoming. I know of 6 people who left this year. Really bums me out for all the people looking for help. I agree the tone has started to get weirdly combative and about “who is right”. I understand many pride themselves on “facts”, but please we should all practice nuance and consider the feelings of others in communicating those facts. It’s not just about what works for you individually but also others. Sorry to sound preachy but with many people leaving we should all take note of that and I just want this to work for many, not just those who are confident in their choices/opinions. I personally see no value in fighting back and forth on a forum like this. Many here live happily with Mechanical Valves well into their late years without issue managing INR, it’s often a good option for younger patients. Pellicle is the man with the answers on all questions regarding this, he has lots of tips and facts. Many also have a good experience with tissue valves, which typically last longer in older patients. The Ross procedure is most commonly used in younger patients and there are SOME who believe it is the best option for young patients in that recent large studies have shown it to restore normal life expectancy and can often get you 20 years of normal valves(not saying normal life expectancy can’t be achieved with other valves and even the scariest stats suggest a life expectancy loss of around 5 years, which you have a huge say in with how you approach your diet, exercise,home INR, Etc.). The Ross however is a riskier surgery and should only be performed at HIGH volume, specialist centers. It also makes a 1 valve problem a 2 valve problem, thus making multiple operations a guarantee. Arnold Schwarzenegger had this surgery and his timeline of surgeries was considered successful. Ross can be good for Regurgitation and Stenosis. That’s obviously not appealing to many, but there are many very successful, high end cardios at the Cleveland Clinic and Mount Siani who believe re-operative risk is so improved today that Ross is the best option. See YouTube for Cleveland Clinic and Siani breaking down their stats—its incredibly
Encouraging. See videos on YouTube from last year or a few years ago of Dr Ismail El-Hamamsy breaking down the benefits and risk of Ross. Many of the leading voices in cardio think that Ross should be much more prominent in the future. There are also many who think Foldax studies could change the future of heart valve surgery, along with TAVR, of course. My cardio at Cleveland Clinic(mostly regarded as the best center in the world) does almost all of his surgeries minimally invasive now and that’s also of note when considering valve choice and re-operation. Though many in this forum are skeptical of advancements. I’ll allow you to decide your own level of hope on matters like Foldax and TAVR. Hope this helps! I personally think the future for us valve folks looks really promising and I’m happy there are many good options.
 

Protimenow

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Interesting.

I don't recall many lively disputes on this forum recently - although Tom in Mo and I have gotten into a few rather heated disagreements.

It was MUCH WORSE years ago. It's a lot better now.

I haven't learned of any members leaving this forum. (I haven't left, but there are times when I just don't have time to visit).

You gave an interesting summary. One thing -- the spelling is Sinai - if you search for the other spelling, you won't find it. (I'm assuming this is Mt. Sinai in New York(I think), and not Cedars-Sinai in Los Angeles (they also have a really good cardio department).
 

pellicle

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Hi

It’s very sad that I keep seeing/hearing from people that are leaving this forum because it no longer feels constructive and welcoming

well that is as you say based on feelings. I would also say that people are often unable to have a discussion and instead look for someone to say "yes, you're right" or "I agree"

To me if I don't agree and if I do see reasons that they appear to have not considered then it is up to me to be honest about that and not just give them convenient or comforting lies.

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be that about AC Therapy or valve choice.

People also do leave and many get to a point when their inner self says its time to leave and they don't feel like they can just "drift away". In that case people often find themselves picking reasons to leave to justify it to themselves.

Coming here is always going to be welcoming and supporting, but equally robust discussion and rigorously looking at things is what people like me feel is right.

I've been accused of being a "mech valver" but that's done in the convenient ignorance of the many times I post that a tissue prosthetic may be ideal (something I usually say to anyone in their late 60's or someone I feel will not properly attend to their AC Therapy). The surgical guidelines once made this stuff clear ... but it has been muddied.

There are many detail reasons for the choices we make, and sometimes the asker hasn't informed us of all that detail. Other times people prefer simplicity.

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happily for us here there really are no wrong answers. Only ones best suited to you and your specifics.

Myself I've had 3 surgeries, when I was an adolescent (and the surgeons were concerned to preserve the valve knowing it would lead to a later operation, but in the 1970's were banking on better technology emerging; it did). My second I had a cryo preserved living tissue homograft, which my surgeons had hoped I'd make that age group required to make that statistically better and wanted to avoid me "being on warfarin just yet". In the 1990's that was also wise for a 28 year old who soon after found himself in Japan. My third was a mechanical because as my surgeon said "nobody will be lining up do do your fourth" (because after all the aneurysm work and 3 priors that survival would be lower and risk of severe impingement of quality of life.

I always suggest to people to look beyond the surgery of now to the outcomes which it will lead to, and do so with open honest eyes.

you have (as always) my best wishes.
 

Jmprosser.lab

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Correct! My mistake, Mt. Sinai in New York(Dr Paul Steltzer and Dr El-Hamamsy) has some of the best surgeons in the world. Statistically, No one has performed more repair or Ross procedures than them and with outstanding success rates(which are of course relative and require looking into for more specifics). That centers studies and success rates are a huge reason why Ross is now being expanded into more centers across the US. They are doing much of the teaching to cardios as well. My Cardio at Cleveland Clinic is also trending heavily towards Ross. I’m still unsure. And I’ve had a few people(3 in 2020) message me about leaving and seen some others post the same. But point taken, I’m glad it’s better than it once was.
 

krosson62

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Hello everyone,

I was glad to find this website and I spent few hours readings people experience and advice and it was very interesting. I really appreciate to see people willing to help and share experiences. Now, I would like to talk about my dilemma and see what you guys through your experience might think of it.

I am Canadian (french canadian, that would explain the bad grammar haha), currently living in Western Canada. I was diagnosed with a Bicupsid Aortic Valve at an early age and I had an open heart surgery when I was 10 years old to do a little repair on the valve. I went to do a CT recently and they found out that I have an Aortic Aneurysm at the Ascending Aorta ( currently measuring 4.9cm at the fattest spot ). My surgeon said we should operate now because I am healthy and I agree with him. They also check my valve and my heart. My heart functions are perfects and my murmurs is only mild-moderate but will need replacement for sure in the near future so the surgeon advice that we replace the valve now while the chest is opened, which I also agree with. My health is very strong, my blood test are very good and I never feel tired for no reason.

Now, regarding the type of Valve, I know that the common recommendation is to go with the Mechanical Valve. However, I am afraid that going with the Mechanical would go against my way of life and would like to see what you guys think. I am married with 2 young Children. To earn my living, I am a Log Home Builder ( if you guys watched the show "Timber King", thats what I do ). So it is a physical job, I am carrying heavy Chainsaw half the day and I hurt myself now and then ( cutting mylself, falling ) and as I understand this could be problematic when being under Warafin. In the winter, when the job slow done, I go live in the bush in total isolated area for 3 to 4 months where I run a trapline ( can be dangerous now and then ) . I really wish to carry on that way of life and to raised my kids this way and I am afraid that going with the Mechanikal will force me to change my life.

My surgeon is very open and although he originally suggested the Mechanikal Valve due to my age and he is not against me using a Tissue Valve, I only met him once and have to talk to him more.

So, if some of you could share some experience considering my situation, it would be great.

Thank You guys

Julien
Yes this will change your life. Not only with the warfarin but also the continuous cost of INR testing for rest of your life.. Just something else that should be considered. Good luck. God be with you.
 

pellicle

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Yes this will change your life. Not only with the warfarin but also the continuous cost of INR testing for rest of your life.. Just something else that should be considered. Good luck. God be with you.
Julien self tests for peanuts ($6 a week), as do I and probably the warfarin saved his life.


Don't rely on God, rely on yourself
 
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vitdoc

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I had my first aortic valve repair at age 29. Tissue valve , didn't last very long - 5.5 years (different era 1977) replaced with St. Jude 1983 started warfarin. 2006 aortic aneurysm and new valve and 3rd degree heart block secondary to multiple previous surgeries. Got pacemaker. Still ticking with warfarin.
Every procedure has risk. At age 29 with a non mechanical valve you will have more procedures.
Using non mechanical valves probably at least 2 or 3 more unless there are some breakthroughs. So you can throw the dice and hope for a breakthrough that will take care of you with one more procedure without warfarin or you go mechanical which may be one and done but with warfarin. If no significant breakthrough than multiple procedures each with their own risk. Even TAVR procedures have been associated with heart block and stroke.
Warfarin for me for 37 years has not been a big deal. Did everything I would have had I not been on it. (maybe not mountain biking) but road biking.
Finally if there is a big breakthrough say an artificial valve that doesn't require anti-coagulation and could last indefinitely and you really want to get off warfarin you could request removing the mechanical valve at that time. Not sure if physicians would do that if you are doing OK but it is a possibility down the road.
Good luck. And I agree rely on yourself. Finally there is no perfect solution. If there was we wouldn't be having this conversation. Just make sure that you understand the issues as best as you can and don't let irrational fears get in your way.
 

pellicle

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and you really want to get off warfarin
a point often ignored is that later in life people often find themselves on anticoagulants for other reasons (such as a stroke). I'm quite comfortable to have started at 48 years of age before I ever had such (and of course now probably won't)
 

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